Saturday, April 18, 2015

66 Degrees...

Sixty-six degrees.

Not the name of the latest hit boy band.

Not the temperature outside (which, incidentally, would be awesome right about now!).

Not even the temperature inside my house. (Personally I like a nice even seventy).

No, sixty-six degrees is the number that tells how much Tess's spine has curved.

Yes, you read that right. Tess has a sixty-six degree curve of her spine. In order for you to fully appreciate what that looks like, let me give  you a visual.

This is an X-ray of Tess's spine taken ten days ago at Boston Children's Hospital. This is what a sixty-six degree curve looks like on an eleven year old little girl. This is why we have made the very tough decision to let the Spinal surgeon perform a major spinal fusion surgery on Tess.

We met Dr. Snyder (the surgeon) yesterday. He was very blunt when he brought us that image and told us in no uncertain terms that this curve would just continue to worsen and eventually, "...will kill her.".

Because the curve is up high, it has already compromised her left lung to the point where she often gets pneumonia's there and it doesn't fully expand anymore. Last October's pneumonia was case in point of what this scoliosis is doing to her overall health.

Then there's the physical limitations it is burdening Tess with. Tess fights so hard to make her muscles work even under the best of conditions, forget that now she is also fighting to hold her upper body, neck and head up so she can try to move her arms and hands with purpose. And have you ever tried to take a deep breath while bent over? Try it. It's not comfortable by any means and Tess is constantly trying to breathe like this.

While we are very scared to put Tess thru this major surgery, we are now more scared not to. How can a parent not want to fix their child's spine when it looks like that?! Then there's the fact that if we wait too long to let her have the surgery, we'll miss our window and she'll be too fragile to even get it.

Plus, Dr. Snyder was so thorough on what has to take place prior to the surgery to ensure the safest and best possible outcome for Tess that it made my head spin (but in a reassuring, he's on top of it, kind of way).

He has set up an appointment for a sleep study to see if we need to do more to help her breathe at night while she is sleeping. Everyone suspects that yes, she will need some sort of help but the study will tell us exactly how much and therefore, the best way to do that. It will also tell us if she should have her tonsils removed because the theory is, they are blocking her airway to some degree due to being enlarged. Dr. Snyder said he strongly suspects her ENT will recommend this minor surgery prior to the spinal fusion.

Then she needs to have IV injections of some medication to strengthen her bones. Dr. Synder has concerns that without this, her vertebrae won't be strong enough to hold the rods and screws and could even possibly fracture when they are placed. Yikes! So that is priority number one and that appointment is on the books.

Tess then needs to see her physiatrist for possible botox injections and maybe even put on a medication called Baclofen to help control her tight muscles. Dr. Snyder said that kids like Tess, who have Dystonia (where the muscles spasm from low to high tone) often have pain management issues post surgery (which would explain the bilateral hip surgery pain that went on far longer than anyone expected it to).

Then she needs to be seen by the Complex Care pediatrician who will coordinate with every one of her specialists from Portland to Boston and make sure that every one of them have cleared her for the surgery.

Then...the surgery.  It's scheduled for September 29th. Dr. Snyder didn't want it any sooner than that in order for Tess to get herself as ready and strong as possible, especially the bone strengthening injections which need time to take effect once administered apparently.

All in all, we feel good about it. Terrified, but then, we're used to that feeling where the Toots is concerned. ;)